My Pain Was Dismissed By Four Gynecologists, Until I Asked These Questions. This Was My Journey to Getting Diagnosed With Endometriosis.

Pain is part of life. We deal with the occasional headache, body ache, or pulled muscle, and the discomfort is temporary. It's normal for most people to experience one or more of these, unless you have a chronic illness. Those who suffer from a debilitating disease can experience pain nearly every single day. For people like me, this pain interferes with every aspect of our lives — from relationships to friendships, interrupting what would otherwise be a steady routine.

It's estimated that roughly 75.2% of women with endometriosis feel misdiagnosed by doctors. Approximately 53.2% of these cases are attributed to gynecologists. The average time for an endometriosis diagnosis is around seven years, and that's if you can find a doctor who takes your pain seriously.

The first time I heard a gynecologist confirm what I'd always suspected, I'd spent more than a decade of my adult life wondering why my cycle was so debilitating. Now, I'm sharing what questions I asked to break the statistical cycle that so many women experience.

My Endo Story

I've never known a time in my life when I didn't have painful periods. I was 11 when they started, and it only took about a year before they became more than the average tween could handle. Abnormally heavy bleeding, body-wide aches, and cramps that I felt from my neck to my feet were “normal” to me.

The pain evolved as I got older, taking on a life of its own. Sometimes, it would feel like an electrical storm in my abdomen. Other times, there would be a dull ache that radiated down my legs. Other times, I felt a deep-seated ache in my back, accompanied by cramps that wound their way like snakes up my obliques. No two months were the same.

In between, I experienced horrendous bloating that added even more pressure and pain. Headaches, burning sensations, extreme fatigue, and leg cramps joined the party after I turned 30. Eventually, the pain happened between periods, and I knew it was time to take action.

I went on birth control pills at 20 years old. While they helped, they also turned me into a moody monster. During my first gynecologist visit post-high school, I was terrified. I didn't want to be seen as a patient with abnormalities. I went on record with the most basic symptoms, saying that my periods were far too heavy. Even this should have been a red flag, but I was dismissed almost immediately after my pelvic exam was normal.

“The pills will help,” my doctor said.

He wasn't wrong, but he also wasn't right.

Looking For a New Solution

I went back after a couple of years when my mood swings were beginning to affect other areas of my life. I'd done my own research on IUDs, since my doctor hadn't given me any other option. He hadn't even discussed different methods of birth control with me. I brought it up, and he said, “Sure, we can do it, if that's what you want.”

His words didn't instill confidence, but I was ready to try something — anything — that didn't make me feel like I was losing my mind.

The insertion was painful, and without warning, I remember getting dizzy and lightheaded. My doctor was cold, impersonal, and ended the appointment with a “see you in two weeks.”

My moods steadily leveled after about a month. The pain lasted several months, but my period symptoms were markedly less after six months. A week later, after insertion during my follow-up, I had a cyst. My doctor thought nothing of it and ordered a urine test. The test results revealed hematuria, indicating the presence of blood in the urine. This was my first red flag, and when I asked outright if I should be worried, my doctor said something that would scar me for future visits.

Time For a New Doctor

I had to push harder for an explanation, at which my doctor was visibly annoyed. His impatience was palpable. He explained that it could be due to menstruation, and there was no need to worry. By the time I came back a week later, the blood was gone, and so was the cyst. I never pushed for more answers, but I did find another doctor.

What I didn't know at the time is that hematuria can be a sign of endometriosis.

As with the first doctor, endometriosis was not on the radar. However, this was the first time PCOS was mentioned. I had my Mirena IUD replaced after about five years (now it lasts up to eight years for most). I explained the pain I felt after insertion, and my doctor, who was far nicer than the first, explained my uterus looked a little small for large IUDs.

She recommended I stay away from other hormonal IUDs and stick with Mirena, since it's the smallest. Insertion this time was only slightly easier, but having a doctor with a good bedside manner helped. We briefly discussed PCOS, but she was still not entirely convinced. Before I could push further, she left the practice. I was left with a brand new IUD, no answers, and even more confusion about what was happening in my body.

The Final Straw

No one talks about the mental stress and anguish that happens when something is wrong with your body. It's a pain and discomfort only you can feel, and it's a lonely experience. Despite being forced to carry it, society tells women they can handle so much more.

This is why we still have IUD insertions without the option for pain management.

This is why so many of us are misdiagnosed, and why doctors hesitate to listen to our claims.

Logically, we have no reason to lie; none of us wants something to be wrong. Women's healthcare is a unique battle that often goes undiscussed, because so many of us “deal with it.”

This is precisely what I did, until I found my fourth doctor.

Gynecology options are relatively limited where I live, and I was hoping and praying for the best. At this point, I knew something was wrong. I'd had my new IUD in only two years, and I was beginning to experience symptoms again. My periods came back (albeit shorter), my cramps made a disheartening reappearance, and I was starting to get hormonal headaches, which had never been much of an issue.

I was fed up, and I came armed with a journal detailing the last full year of symptoms. It detailed my early periods and the pain, as well as my heavy flow. I held nothing back and showed my doctor a list of at least 25 symptoms.

More Than I Could Take

Looking at this list now, it's unbelievable that so much was dismissed. My doctor read my list and said, “Well, polycystic ovary syndrome is possible. What I can do is put you on birth control pills in addition to the IUD and see if that helps.”

I'm sorry, what?

It felt like a punch to the gut, and I would have happily taken that over the pain that was steadily getting worse. Part of me was relieved that a doctor was doing something. The other part of me, though, knew this didn't quite feel right.

Approximately five percent of women have endometriosis that's comorbid with PCOS. In reality, this number could be higher since so many women are misdiagnosed in the first place. My doctor ordered basic blood work: glucose, cholesterol, and thyroid levels. No hormonal panel was done, which would have ruled out PCOS.

At the time, I didn't consider that maybe my doctor didn't want to rule it out. I had slightly elevated blood sugar levels, but was told, again, it's “nothing to worry about.” Now, I know this is also an indicator of insulin affected during endometriosis flare-ups.

Finding the Missing Piece

Three years into my second IUD, I found yet another doctor. At this point, I was exhausted mentally and physically. I'd been holding it together, as most women do, but couldn't ignore the fact that my IUD seemed to be losing steam. I was primarily concerned with the hormone level of my birth control because if I was experiencing period symptoms, something wasn't right. I was referred to a women's health clinic by a friend to whom I will forever be grateful.

Right off the bat, they went through a lengthy intake form. I was asked questions I'd never been asked, and it made me feel comfortable providing even more background information.

I felt genuinely cared for, and this is the first step I'd recommend to every woman: find a doctor who makes you feel like a human being with rights. Being valued as a patient is crucial when you're battling a chronic illness.

For 13 years, I didn't know my experience could be better. Yes, I was mentally drained by my fifth gynecologist, but the relief quickly replaced my exhaustion. I didn't hesitate to say I wanted to speak with my doctor about PCOS. By the end of my appointment, I heard the words that made me finally feel seen:

Why Am I Experiencing So Much Pain (and Why for So Long)?

This was my first question from the outset. After going over my full medical history, I questioned why my periods caused pain beyond the standard threshold. Since I do not have a history of chronic cysts, this was the first question that tipped the scale in favor of endometriosis.

It's a debilitating illness that causes tissue to grow outside the uterus. This can grow on and around organs, essentially “sticking” everything together. It causes pain, which is made worse by inflammation. Since it's a full-body illness, it can cause many symptoms – not unlike what I'd described to my previous doctor.

The timeline of my pain was another thing that convinced my gynecologist. The pain was happening outside of my periods. While it tended to be worse when I was bleeding, it didn't flare up only when my hormones were shifting. Therefore, the cause of my pain leaned toward something physical, whereas PCOS is fundamentally a hormone disorder.

This distinction may have been one of the biggest “aha!” moments. This led to my explanation of the type of pain, its location, and how frequently it occurred — asking why I was in so much pain and why it was so consistent opened up a new conversation.

A comprehensive blood panel revealed that my hormone levels were within normal range. PCOS was ruled out, and endometriosis became the primary suspected diagnosis.

Why Is My Birth Control Not Working?

The biggest red flag — and the reason I made a secondary appointment — was due to my birth control. Without hesitation, I questioned why it wasn't relieving my period symptoms. This prompted a conversation about my IUD insertion and how long I'd had it.

Through this conversation, I learned several interesting things about birth control and endometriosis. One, IUDs are effective in preventing pregnancy for those with endometriosis, but they can lose potency for treating symptoms quickly. Heavier periods affect how well hormones suppress symptoms, which is likely what I experienced.

Two, the Mirena IUD is considered an effective non-surgical option for endometriosis. Both facts ultimately provided more evidence for the suspected diagnosis. It is essential to note that this is my personal experience; every woman is unique. Those with advanced-stage endometriosis may not find relief from birth control.

If you're not on birth control, asking questions about potential options for pain management is crucial. You won't have a yardstick by which to measure the effectiveness of birth control, so having options is essential. Birth control can help alleviate symptoms in some cases. If the pain persists, you will have an answer either way.

What's Causing This Specific Pain?

Much of the pain I have is associated with cramps, but it feels unique. Asking questions about specific pain helped narrow down what was happening to my body. For example, I probed about the pain I felt from bloating. I described my discomfort as “feeling like my abdomen is full of air.” This is a common endometriosis symptom, but connecting the pain I felt as a result made it even more likely.

Bloating is often referred to as “endo belly.” This is one of my more obvious symptoms and, unfortunately, was being confused for PCOS. Endometriosis causes inflammation, the formation of scar tissue, and hormonal fluctuations.

I learned that bloating isn't just food-related, but can also be triggered by the illness itself. It often causes fluid retention, which contributes to the unusual “full” feeling. All of this causes pain, but specifying the location and how it feels was essential.

For some people, identifying pain during bowel movements or back pain can indicate a more serious condition, such as bowel or spinal endometriosis. It's essential to recognize that this can only be confirmed during a laparoscopy. In rare cases, endometriosis or adenometriosis may show up during a pelvic exam or MRI, but it can't confirm a diagnosis.

Is This a Hereditary Condition?

The cause of endometriosis is still unknown. Since it's only visible through surgery and an MRI in rare cases, it's a tricky illness to diagnose. However, evidence does support the condition being somewhat hereditary. Two key genes are connected to inflammation and tissue growth, which can, in theory, be passed down to your offspring. Therefore, it's worth starting a conversation about inherited chronic illnesses.

Your doctor will discuss your family history, and this is an excellent opportunity to ask about genetics. The women in my family have a history of complex and debilitating periods. My grandmother had a hysterectomy, but at that time, endometriosis was not widely known.

However, this is still a red flag and something my doctor wanted to investigate further. If anyone in your family has endometriosis or has been undiagnosed with symptoms, it could support your own diagnosis.

What Is Endometriosis?

This question seems simplistic, and it is. This isn't one that I asked my doctor; instead, it was one that she asked me. “Do you know what endometriosis is?” She said, and it made me pause.

I knew the symptoms, and I knew it was debilitating — but did I know the biology behind it and how it grows?

Did I know about each stage?

Did I know treatment options, or alternative ways of being diagnosed?

What my doctor was asking shifted my perspective from seeing endometriosis as a clinical term to something that was personally related to me.

In the reverse position, asking your doctor to explain what endometriosis is creates an open dialogue. It allows them an educational moment, but also opens the door for you to ask follow-up questions.

If I'd asked my first two doctors, I suspect they'd give me a short, Reader's Digest version of endometriosis. This starkly contrasts my experience with my current doctor, who explained the details of what I was potentially up against.

Sometimes, asking questions isn't always for a diagnosis. This question also serves as a guidepost for your doctor's level of commitment and compassion toward your beliefs about your body.

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